Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE): A recruitment registry for Alzheimer’s disease and related dementias, aging and caregiver‐related research

Abstract

AbstractBackgroundThere have been large investments in Alzheimer’s Disease and Related Dementias (AD/ADRD) research, but low AD/ADRD research participation from ethnically diverse individuals can hinder the facilitation and progress in the advancements of AD/ADRD prevention, treatment and care. The fastest growing racial group of older Americans at risk for AD/ADRD are Asian Americans and Pacific Islanders (AAPIs), but their research participation is limited. To address this disparity in AAPIs’ research participation, a recruitment registry, Collaborative Approach for AAPI Research and Education (CARE), was established to educate and engage AAPIs in AD/ADRD, aging, and caregiving related research in California, U.S.A. We will discuss an overview of CARE, completed/planned activities, and future vision.MethodsCARE created a recruitment registry of 10,000+ AAPIs. CARE has 25+ community/research partners, many of whom serve on CARE’s Community Advisory Board, who help to a) ensure that the outreach/conduct adheres to the principles of cultural humility/appropriateness; b) provide overall guidance/feedback about the registry’s development; c) provide input about research findings; and, f) provide perspectives/suggestions on community engagement. Focus groups (N=14) with AAPI cultural groups were conducted to identify best strategies for recruiting/retaining AAPIs’ CARE participation and establishing effective processes for connecting participants to studies. Based on focus group data, Discrete Choice Experiment (DCE) surveys will be conducted in early 2021 to examine AAPIs’ preferences on recruitment messages/strategies.ResultCARE’s theme is “Health Across the Lifespan”, which considers the intergenerational families and collectivist AAPI cultures. CARE’s full launch was on 10/15/20 and as of 01/09/21, 1,400 AAPIs have enrolled. CARE is promoting its use via CARE’s Brain Trust meetings and the National Institute on Aging. Several outreach materials have been developed including: AD/ADRD caregiver audio stories; animated video; flyers; community‐tailored presentations. CARE’s activities are available in five spoken languages (English, Mandarin, Cantonese, Korean, Vietnamese) and five written languages (English, Simplified Chinese, Traditional Chinese, Korean, Vietnamese).ConclusionCARE aims to meaningfully include AAPI in AD/ADRD/aging/caregiving‐related research; and, for CARE to serve as a national resource for ADRD prevention, caregiving, and treatment research. We envision CARE to become a national recruitment registry and expand to include additional AAPI languages.